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Matt Feret (00:00:02):

Hello everyone. This is Matt Feret, author of the Prepare For Medicare book series, and welcome to another episode of The Matt Feret Show, where I interview insiders and experts to help light a path to a successful retirement.

Matt Feret (00:00:17):

If you're listening to this, put a face with a voice. I've got a YouTube channel and you can find it on the show home page at themattferetshow.com or just search for it on YouTube. Thanks in advance for liking, following, and subscribing everywhere you are listening and watching.

Matt Feret (00:00:33):

We've all heard this term caregiving. And for each of us, it likely conjures up different thoughts and emotions. Oxford Dictionary defines caregiving as the activity or profession of regularly looking after a child or a sick elderly or a disabled person. But the phrase is more commonly used for services or people taking care of family members who are not children. Formal caregivers refer to companies, franchises, and even the entire underground off the radar network of informal, even sometimes under the table companies providing caregiving services in exchange for money. But by far, the vast majority of this country's more than 43 million caregivers are unpaid spouses, partners, family members, friends, and neighbors involved in assisting others with activities of daily living and/or medical tasks.

Matt Feret (00:01:26):

Don't forget, what constitutes caregiving isn't normally covered by insurance plans, Medicare, Medicaid, and are really only partially covered by long-term care insurance. Be sure to check out episode 10 of The Matt Feret Show for a comprehensive overview of long term care insurance. The Blue Cross and Blue Shield Association estimates the annual economic impact of both types of caregiving across these channels is estimated at $264 billion. Yes, I said annual. And yes, that means per year, which is absolutely astounding. But this episode isn't really about the macroeconomics of caregiving. The mental and physical strain on caregivers and their families, those billions of dollars don't measure is the focus of this episode of The Matt Feret Show.

Matt Feret (00:02:16):

Charlotte Bayala is my guest today. Charlotte is a caregiver. She's going to give us an insider's view into her caregiving journey, how to prioritize yourself, your family, your activity, your mental wellbeing, and your physical health. She's used yoga, meditation and other caregiver outlets along the way. And now she's helping other caregivers across the country navigate formal caregiving in formal caregiving and everything in between. Enjoy. Charlotte, welcome to the show.

Charlotte Bayala (00:02:47):

Thank you, Matt, for having me. I really appreciate being able to have this conversation with you.

Matt Feret (00:02:51):

Yeah, it's going to be awesome. I know already. So caregiving, that's what we're talking about today. Very serious topic and a topic for millions and millions of Americans and one that's not often discussed many places.

Charlotte Bayala (00:03:06):

Yes.

Matt Feret (00:03:07):

It's this silent underground Facebook group website. You know this, so I'll be quiet. You tell your story. Go ahead.

Charlotte Bayala (00:03:19):

Yeah. About almost 10 years ago, everything, we were just living a normal life as a family with my husband and I and our daughter, just having fun. And it was around Christmas time when my husband started not to feel well and he noticed that there was a lump on his neck. So the doctor right away, had him come in and checked him out and said, "I really think that we should have this lump biopsied." And by the end of the week, so it was in between Christmas and new year's that year, he found out that he had thyroid cancer. For me, it just felt like this was an assault on our family, because automatically there were so many things that I didn't know that... And I'm a research person. So I'm like, "What does that mean? What do you mean and what do we need to do?

Charlotte Bayala (00:04:16):

And how do we fix this?" And there's never really any answers, especially in the beginning. So we went through the process. He, finally, in February that next year had his thyroid removed and they had found that almost all the lymph nodes on the right side of his neck also needed to be removed because it had left his thyroid and gone into his lymphatic system. And it was just a matted mess. That was the scientific term that the doctors told us. And so when that happens with thyroid cancer, what normally happens is you're not 100% free of having cancer because it has already spread.

Charlotte Bayala (00:05:02):

So then what happens after that is you try to stop the spread. They did radioactive iodine therapy, which in itself is crazy because you're basically trying to radiate whatever's left by taking this massive pill and isolate. And then over the past 10 years, it's just been some years, there've been multiple surgeries. We've been a couple of years where we've been free of surgery. But you spend the rest of your life combating it by taking high levels of thyroid hormone, and then picking it out whenever it gets too big. So you can live with thyroid cancer, but it is not easy living.

Matt Feret (00:06:01):

And for someone who's not watching this, just listening to this, you're not 60.

Charlotte Bayala (00:06:07):

No.

Matt Feret (00:06:09):

This happened when you guys were young?

Charlotte Bayala (00:06:11):

Yeah. I was just 35, I want to say. 37, yeah.

Matt Feret (00:06:20):

And how old was he?

Charlotte Bayala (00:06:23):

He was 40. So he was young. Yeah. Yeah. Technically papillary, thyroid cancer is a slow growing cancer. But he does have an aggressive sub variant of it. So that's why if someone who's older is diagnosed, there's a wait and see and watch things because it does grow slow. But when you have it so early in life, then you're being told basically that this is going to happen for forever.

Matt Feret (00:06:58):

So you explained a little bit what you went through emotionally at the time of diagnosis and then went into... And maybe this was self protect mode, but then you went into like, "Well, I did research and I found it out and we started attacking it," which is good and noble and awesome. But I have to imagine the ups and downs of those first months, years. What was that like?

Charlotte Bayala (00:07:27):

At the time I was actively full time teaching as a yoga and meditation teacher. And as soon as I found out that he had cancer, I lost my ability to be able to care for myself. So me actively teaching people daily, how to breathe, how to relax, how to reduce stress, that actually helped me because it made me have to disconnect from what I was doing in the rest of my life. All the worry, all of the stress, because to teach a class, I had to focus, right. But then the other 23 hours of the day, I spent all my time either trying to control by researching and trying to seek information, or was spending the rest of my time worrying. But to a massive level where I would say within the first two months, it became an issue so much so that I contacted my doctor and explained to her what was going on.

Charlotte Bayala (00:08:33):

And I told her, "You know what? I'm really worried about my mental health." And she said, "My first suggestion would be for you to meditate." And I got so angry because for me to have that tool already, me teaching other people how to do this thing that my doctor suggests that I do, I was like, I can't believe that I already had the habit, but finding out that my husband had cancer kicked me off the chair so hard that all I could think of, it was self-preservation like, how do I keep my family intact?

Charlotte Bayala (00:09:18):

So for me, the first six months were hard because I had to somehow learn how to go back to prioritizing myself, to not be just a caregiver to my husband, but also his wife and his friend, and have a stable household for my daughter, trying to keep it all together and not wanting to let anything fall through the cracks. That was the lie that I tried to live for a while, because I was like, "I got this. We're just going to do it." And I just went all in. But there's only so long caregivers can do that for. It just starts to fall apart.

Matt Feret (00:10:14):

And you said it took you six months before you came above the waterline and took a breath?

Charlotte Bayala (00:10:19):

Yeah.

Matt Feret (00:10:20):

What spurned you to swim for the surface and get your nose and mouth above water?

Charlotte Bayala (00:10:31):

I've known my husband since I was in high school. We grew up together. And so, up until the time that he found it out that he had cancer, we had spent the majority of our lives together and enjoying life. And so I was confronted with this period of time where after I got over the fear, after I controlled the worry, I realized that we weren't really living the way that we would want to. There wasn't a good balance in life. We weren't enjoying life in spite of what was happening. And so I think it was the two of us together without talking about it. We didn't have a family meeting and say, "All right, this has been a sucky six months. Now we're just going to flip the switch and roll over into the way things used to be."

Charlotte Bayala (00:11:30):

But I think we just instinctually, since we really enjoyed spending time with each other, we came back to that fairly quickly and had to work hard at choosing to see things as positively as we could, but without being a rose colored glasses type of couple. We are the most sarcastic group that you can probably... We are not everything's rosy. I'm not even that type of yoga teacher. So we were just like, "This isn't going to break us. We're going to have to live with this. And so we're going to have to figure out how to do it."

Matt Feret (00:12:10):

And you've said this, and I definitely want to get into this, the yoga and the meditation teacher, not even just a practitioner, just like you're teaching this stuff. And I want to hear a lot more about that. But looking back to those first six months, for people listening and or watching, what would you urge someone to do faster or differently, or more slowly than you did in the first six months, if right now they're listening or watching going, "I am right there?"

Charlotte Bayala (00:12:41):

I think the first thing, once you have an opportunity for everything to slow down enough for you to realize what's actually happening, is for someone who's just becoming caregiver or even someone who's been a caregiver for years and just still feels like this, is to realize that when something happens to your loved one, when they find out that they have a disease or they've become disabled, that changes their life and it changes your life. And the problem is that if you continue to try to live your life the way you did before you became a caregiver, you will constantly be battling against these ideas that you have for what life, happiness means to you that aren't there anymore. You become a different person as soon as you hear those words. And so if there is a way that you can mourn the loss of the person that you were and fully accept this change in your role, in life, in your role between you and the person that you care for, right?

Charlotte Bayala (00:13:51):

Because it could be your wife has breast cancer. She's the one that used to always handle things in the household. The roles are now switched where you have to. So there's a lot of change. So first is to understand that your life has changed. And then the second one, I would say, first is just learn how to breathe. Meditation is important, yoga and moving or running, however you like to be physical is important. But if you're scared of the quiet, which is meditation and yoga. If you're scared of the emotions, the thoughts, the feelings that will come up, if that makes it difficult, what I would say is to learn how to truly breathe, because that's something that you can do when you're waiting in a waiting room, when you're walking down a hall, when you're waiting at a return line in a store and just frustrated. I find that learning how to use my breath in order to calm my nervous system is by far the one tool I would never give up.

Matt Feret (00:15:02):

So beyond prescription drugs and beyond running a marathon, breathing?

Charlotte Bayala (00:15:09):

Breathing, deep breathing. Not breathing to keep you alive. That's what we do all day long, right? We have to breathe in order to live. What we do when we breathe normally is not sufficient to allow your body to understand that you're safe. It's basically you are running on autopilot, your body knows you have to breathe to stay alive. And so it does the minimum that it needs to. When you become stressed, if you notice, your breath becomes a lot shallower, it'll come a lot quicker. Let's say you're getting news in a doctor's office and you're anticipating that it's going to be bad, you can hold your breath.

Charlotte Bayala (00:15:53):

So the more stressed out you are, the less breathing you do. And when you do that, your body instinctually is thinking "There's something wrong. I need to do everything to protect this body." And so your nervous system starts to go into this fight or flight mode. But if you're able to find yourself in that place and take even just five deep breaths, like letting go of your belly, just breathing like a baby would, while it's sleeping, you would notice that you feel so much better in just those five breaths.

Matt Feret (00:16:30):

And did you forget how to do that? Did you have to be [inaudible 00:16:34]?

Charlotte Bayala (00:16:33):

Oh, you hold your breath a lot.

Matt Feret (00:16:36):

Yeah.

Charlotte Bayala (00:16:38):

Yeah. I forgot how to do everything. It was like my mind was wiped. Clean of all knowledge I had of things that I could do to help myself because 100% of my energy went into trying to keep my husband alive as if I had that power and trying to keep life as normal as possible for my daughter. Nothing else mattered at that point. And so anything that I did for myself was not even an afterthought. It just wasn't there. Even with me teaching regularly, I saw that as that was my job. That completely switch to, I have to go to work. How am I going to get to work? How am I going to work and not cry through a yoga class? Right. So the focus was, how can I do that? And I would go in and leave as quickly as possible. So it was what I did to try to continue with my responsibilities in my house and outside at work.

Matt Feret (00:17:42):

So before we move on to six months plus, you said family, you said daughter, extended family. Did they help? Did they not? Did they know what to do? Has anyone done this before? Did they move in? Did you not want them to move in? And your daughter, she's in school?

Charlotte Bayala (00:18:03):

Yeah.

Matt Feret (00:18:04):

What was that all like?

Charlotte Bayala (00:18:07):

Yeah. We didn't live near family at the time. We were in Wisconsin and our family was scattered in between Pennsylvania and Puerto Rico and Florida. And so the thing is, as soon as we got married, we moved away from home. And so I think that was a good thing because we grew up as adults together and didn't have the opportunity to have that to fall back on, to have family nearby. There are pros and cons to that. I think we could think of lots of pros and cons just sitting back, depending on where you are on that spectrum. But we jumped in not expecting any help, except for when he needed to have his thyroid removed. That first surgery, we had his parents come in and then my sister came in. And so that way, we could have my daughter go to school, have people to support her at home, and then have a little support when my husband and I came back because he was in the hospital almost a week and I never left the hospital during that time.

Charlotte Bayala (00:19:34):

So to know that my daughter was supported and she was being cared for, was really the biggest help that we could have. And then we had a lot of friends that really stepped in the beginning. The hard thing with caregiving, though, especially for caregivers who are going to be caregivers long term, is that that help, people love to jump in and help, people from his office did. We didn't have things like Grubhub 10 years ago? You couldn't really order, but they brought meals and they organized that. Those things happen for max a month if you're lucky. After that, it gets a little difficult if you're expecting it. If you just see that as gravy like, "Oh my goodness. Thank goodness I don't have to cook today. Someone just brought a lasagna." That's the best way to look at it.

Charlotte Bayala (00:20:31):

I think that some caregivers have family in town and those family members don't help the way they would expect them to. And that causes them more pain than if they didn't have those people in town. So I can't say that not having family in town, was it a good or bad thing. I know they showed up when we needed them to though.

Matt Feret (00:20:54):

What's your advice then for caregivers, that you were in the situation and you had family out of town, but even friends and office workers. What is the right thing to do? How do people know? I think there's a prescription for when someone dies. Right? There's a funeral. There's a wake. Then you bring the lasagna over, and then you maybe have a pony keg and a party or a very somber memorial service, whatever you do. And then it's over. And then you check in every once in a while and then it's done. But this is different. This is a long term thing. What's your advice to caregivers right now that have extended family? And I don't even care if it's close or far. Is it lower your expectations? Or be very clear with your expectations? What should the caregivers say or do or handle or think about their family either near or far?

Charlotte Bayala (00:21:46):

I would say don't be passive about asking for the help that you need. No matter if it's your family, if it's friends, or if it's because you need to have it contracted out. You need to know, "I can't cook for the next two weeks. I need help with meals." And you find one, the people that, that are actually people who like to cook, that gives that person an opportunity to shine in what they actually know how to do and like doing, and they're able to do it and help someone at the same time. You have to see what thing can you ask a person to do that will benefit them. It sounds weird. It shouldn't have to benefit them, but if you want them to really show up and do that thing, that you need them to do, if they have more of a why to do it, they're going to be more apt to do it. Right?

Charlotte Bayala (00:22:48):

So if you have family, it doesn't matter. If you just have people that in town, you need to be very clear on what you need help with. And you need to realize that whatever you're going to ask for is not too small. So if you're like, "I need to order groceries. I'd really love for someone to pick them up. But I don't really think that I can do it." All those little things that you're like, "Well, whatever. I can do it. I don't have to ask someone to do it." Those pile up. And then you have a long list of things that you could be asking people to help you with that you're doing all by yourself just because you don't think that it's a big enough of an ask. It doesn't have to be a big ask.

Charlotte Bayala (00:23:32):

And be very clear that you need the help. "On Tuesday, I really need a meal. Can you help me with that? Yes or no?" There's no, "Hey, maybe on Tuesday, if you're up to it or if you have time." No, not if you have time. Can you do it? Because the thing is, if you're wishy washy about it, people are more apt to not follow through. And when people don't follow through on something that they've told a caregiver they can do, automatically, the caregiver will be more inclined to think, "Oh, well, then, I'm just going to stop asking for help because people aren't going to show up." The hurt of people, not showing up for you is enough for you to reconsider ever asking for help again, because you're already vulnerable. And asking for help for something that you normally would have been able to do, that's hard to do.

Charlotte Bayala (00:24:25):

So if a caregiver asks for help, they've already had to go through this thought process and an emotional process to actually have those words come out of their mouth. So if you don't show up after you've said, "Yes." If they're waiting around at home, to make sure that you know where the lawnmower is, or for you to come help remove snow and you don't show up, you've not only ruined their day. You've possibly put them into this spiral of, "I got to do this all by myself. How am I going to do this all by myself? I heard Charlotte say, I have to ask for help. I asked for help. They didn't show up."

Charlotte Bayala (00:25:06):

So you have to be very clear. And I personally would say, if that person doesn't show up, you need to advocate for yourself and say, "Hey, I was waiting for you to come around so I could show you where the lawnmower is. This is what happened. I just want to make sure that we were clear that today was the day that you were going to come," because maybe something happened that you don't know about. But don't just sit around and say, "Well, no one's going to help me." No. Why didn't you show up? It's so hard to do. It takes so much energy, but-

Matt Feret (00:25:42):

I was going to say that takes a lot.

Charlotte Bayala (00:25:44):

It does.

Matt Feret (00:25:44):

Because I think most of us... Oh, okay, I'm not going to speak for most of us. I would probably just go, "Oh, that person didn't want to help, and I was a burden." Or, "I was overbearing." And I'd shrink back and I'd never ask him for anything again, either out of embarrassment or out of anger. And you're saying proactively, do not do that.

Charlotte Bayala (00:26:03):

Don't do that, because you can't take it personal. If you hired someone to cut your grass and they didn't show up, you would follow up and say, "This was my assigned day. I was waiting because I had to let you in," or whatever. If you have someone who's going to clean your house and they don't show up and you have to be there for them to do that, then you would have no problem complaining about it. Right?

Matt Feret (00:26:33):

Yeah. Yeah.

Charlotte Bayala (00:26:33):

So if there's a family or friend that says, "Hey, I'm going to come help you clean. Get all the cleaning supplies together and I'm going to show up." And you wake up that day and you get everything ready, and then they don't show up. Not just show up, not show up and not tell you they're not going to be there.

Charlotte Bayala (00:26:52):

Right? That's unacceptable. And I think the thing is, since we're asking for things that are abnormal for us to ask for, like before caregiving, we would not have asked for that help. We take it really personally. Not only the person not showing up or not showing up the way we'd like them to, but just the fact that we have to ask. It's an emotional thing to ask for help. But here's the important thing, if you try to do it all, you will fail. There is no way that you can run your life without support and be a caregiver. The stress is too much. The overwhelm can really start to wear you down. And then what happens is the more stress you are under, and the longer amount of time that you're under that stress, the more you're going to be apt to having your own health issues.

Charlotte Bayala (00:27:55):

And if you have stress induced health issues, like heart disease or diabetes, or any of those big diseases, then who's going to take care of you? If you're taking care of someone, how can you take care of someone if you need help yourself? So for me, if you can try to remove that, it's really personal, which is difficult to do, I understand. But if there could be just a little bit of frustration thrown in there, because you're seeing that it's not just about you, it's about the person that you care for, they're taking from that person. Then maybe that's enough for you to say, "Look, hey, I need for you to help me. You said you were going to. You didn't show up. Let's reschedule. And are you actually going to show up this time? Because if not, you need to tell me now and I just need to find another way to do it." It's hard. Caregiving is not easy. It is not easy.

Matt Feret (00:29:00):

That sounds like for a lot of people, that would be a change. And to advocate for yourself, it's not just for yourself, but it's for your family. It's for your extended family, because somebody's going to have to help you with it. If you say you're going to help, then help. And if not, then don't offer, it sounds like, right?

Charlotte Bayala (00:29:18):

Exactly.

Matt Feret (00:29:19):

And then when you do, make sure you come through. And then if you don't come through as a caregiver, advocate for yourself.

Charlotte Bayala (00:29:27):

And that's the hardest thing for caregivers to do is to advocate for themselves. For me, that's the hardest thing for me to get a person to do, to say, "I am worth the trouble to actually stand for myself, to create boundaries and to do things for myself that I need to do so that in the end, all these things are so that you can be a caregiver long-term," right? So when you start saying, "Well, I'm not enough. It's not that big of a deal," you're actually taking time away from you being able to just enjoy time with that person that you're caring for.

Matt Feret (00:30:05):

And you mentioned, I definitely want to get to this too, so I'm putting placeholders in [inaudible 00:30:10] meditation, but also the caregiver's physical health. That's a thing. It's a big thing because I've read in a couple of places where, when you're a caregiver, your life expectancy drops.

Charlotte Bayala (00:30:23):

Yes.

Matt Feret (00:30:23):

Which is, I'm going to do that. But before I do that, go six months plus. Because again, you're a long-term caregiver. This isn't a six month cancer diagnosis or 12 or an 18 month. You said 10 years. So if stage one is diagnosis and shock, stage two is six months shock. What are the other stages? And six months plus, what is that journey like?

Charlotte Bayala (00:30:52):

So long term cancer caregiving is like riding on one of those rickety old wooden roller coasters. And so stage one is they shoot you right up that hill and you're screaming all the way. And then that hill is as long as it needs to take. And then the person will have treatment surgery. Sometimes it's not six months. Sometimes a cancer with chemo can be a year. So you're constantly screaming up that hill or anticipating the drop. But then once I got past that stage, which was about six months, then the rollercoaster continued and I could start to see, all right, he was at a three month interval of seeing the doctor in the beginning. So that means scans, blood work and seeing the oncologist. And so we would essentially be like, "All right, we got a breather."

Charlotte Bayala (00:32:01):

We have two and a half months, because I have a half a month before you have to go see the doctor for a recheck, you start to get anxious about it. And so you start like you're buckled in and you start going up that rollercoaster hill again. And then once you get to the doctor and they give you whatever the recommendation is, either that hill down is really short or it's really long. It's like, "Oh my goodness." You're on a roller coaster, you can't see what's next because the hill's so high. But then you get over that hill and you're like, "Oh, this is nothing. We just dropped a couple of feet." Or it's, "We dropped all the way back down." And you never know until you're at the top. And that's the problem. So your life is never a full balanced, let's just keep living. It's up and down. "I know he's going to have surgery. Okay. I'm going up that hill. How am I going to handle what happens after?" And so after the six months it was falling into trying to just live.

Matt Feret (00:33:07):

After that six months, were you always searching for some sort of normalcy or at that point, have you been like, "Okay, this isn't going to be normal." Or are you still like, "Can I just get back to normal?" What's that balance there?

Charlotte Bayala (00:33:20):

The balance is we started to try to find what normal was then. So let's say, especially like after surgery, we always loved going to the movies, we loved seeing comedians. But leaving the house, wasn't really easy for him. He would get tired a lot. Thyroid cancer surgery, his was over eight hours long. So there's a lot to recover from. And so what we did was we tried to find, okay, what was it that we liked to do that we can do a different way? And so that just continued. So maybe we didn't go to the movies. Maybe we turned off all the lights, put a movie on TV. It was the intention that we set. So we could have just thrown a movie on and just whatever, watched it. Or what we did was we made it a thing.

Charlotte Bayala (00:34:12):

We figured out what we were going to watch. We set the intention that this was just going to be an experience at home instead of being outside of the house. And that's how we went through. We would take walks outside. We would go do things. We didn't sit down a lot and talk about how we were feeling. And so I think that was because the three of us live full on, no one is harboring much in my house because if someone's irritated about something or upset or scared, we talk about it. But we don't wear it on our shoulders. We didn't live like in a cancer house. It's a weird thing.

Charlotte Bayala (00:35:08):

Cancer was a thing when we had to either go for rechecks or go for surgery. In the in between time, we tried to enjoy our lives together. And that might not have been necessarily what... I don't think there's ever really any normal. I always see life as cycles. And the cycles at that point were however long we had in between doctor's appointments to tell you the truth. And in between, we just tried to do the things that we liked doing. And sometimes that changes when your life changes.

Matt Feret (00:35:47):

Talk to me a little bit more about that. Obviously your relationship had to evolve over that time. But how did your love evolve? Or your idea of love 10 years ago, and your journey over the last 10? How did that evolve? What surprised you?

Charlotte Bayala (00:36:04):

I think what surprised me the most was how seamless it seemed to be for us to go through this period of just hardship and heartbreak and loss. Even though there was no loss of life, there was loss of just the balance we had in our relationship, the loss of living life relatively carefree before cancer. If you're in life with cancer, you look back before cancer and you're like, "Oh my goodness, life was so much easier back then" even though there are probably things that felt hard. So I think what was actually the good thing was that we were able to sit back and be supported by how strong our relationship was before he had cancer. And I think that's the problem oftentimes when you're a caregiver of someone who you're in a relationship with. If your relationship wasn't strong, don't expect for it to automatically become stronger when you're under this, because you really see how people are when they're under this much stress.

Charlotte Bayala (00:37:30):

We're able to shield the world from that when life is easy. But then when life becomes uncomfortable or you feel threatened, you just go into base personality. And so if you had issues in your relationship before caregiving, they're going to be exacerbated when you become a caregiver. They're not going to get better. It's going to get harder. And so the problem is then, can you work on it? Yes, you should. Because if you're going to stay in caregiving long term, then you need to. Because if not, if the person was combative or just verbally abusive, that's not going to get better. So if you weren't working on it before, you need to work on it now. So for us-

Matt Feret (00:38:28):

It sounds like you can't put your relationship life on pause. You really have to say, cancer, caregiving. And that doesn't mean we can't go to counseling or work on things together with or without a counselor or a pastor or something like that.

Charlotte Bayala (00:38:46):

Yes. Because there's so much more. There's so much more happening in your life, there's so much more happening in your relationship. For me, the issue that I had was, I often get hyper focused on things. And so my focus was on taking care of him. So when I got him home after his first surgery, it was, how is he doing? How is he healing? What does he need? Has he eaten? All of the things that caregivers do. But I didn't flip the switch often where then I was like, "I'm just going to sit next to you. We're just going to hang out, watch TV, laugh, talk, go for a walk." Sometimes if we went for a walk, it was because he needed to. He needed to move. That was the caregiver part of me. That wasn't the, "I just want to go for a walk with you."

Charlotte Bayala (00:39:42):

It's how we think about things. And I don't think that a lot of caregivers, first of all, have the opportunity to stop and say, "Wait a minute. When was the last time I just was a person with him?" And if you asked a caregiver who's very overwhelmed at the moment, they would say, "You know what? I don't really care. I'm just trying to keep it together. I'm doing all the things that I need to do. I'm washing the clothes, I'm washing the dishes. I'm making sure that they have food." All these things. When do I have time to be a wife or a sister or a daughter? And what I realized was it has to happen all the time. Because what happens is you lose time. If you're not mindful of what is happening in your day, you miss them looking at you because they need something. They're scared.

Charlotte Bayala (00:40:40):

They need human connection just as much as you do. And just like it's hard to ask for help, it's hard to ask for connection. It's hard to work towards that because then that's you being vulnerable again. And then if it fails, that hurts. And when it hurts, you don't want to do it again. So if that happens, you're in a really bad circle of not connecting with the person that you've given up so much of your life to take care of. And so for me, that's one of the saddest things is for someone to take care of someone out of love, but not have time in a day to actually just love them.

Matt Feret (00:41:24):

Well, when did you figure out you needed to do that? And how did you do it?

Charlotte Bayala (00:41:28):

Yeah, it was within that first six months. Finally, when I got to this place where I was like, "Wait a minute. This is not working for me at all. This is not fun. I can't keep feeling like crap like this." It was then that I started to take a step back. And I actually had to do more for myself in order to see how I was reacting with my world and the people in it. So I needed to catch my breath literally and figuratively. And when that happened, I realized, well, wait a minute. I could feel it then. I spend all day doing all these things. And I sit down to go to bed and I don't want to talk. And I'm irritated and frustrated.

Charlotte Bayala (00:42:21):

And when I started realizing that, I realized, well then, I'm shutting everybody out because I'm doing everything for them. I can't do for people, but then not allow myself to actually enjoy being with them, because then the hurt that I'm causing is worse than me not doing those things. Like me not spending time with my daughter and my husband, because I have to wash dishes is crap. Because that time spent with them is more important than having clean dishes. And the dishes will be washed for sure at some point, but getting that moment back will be forever lost. And so I started realizing that I was missing out on actually being present with the people that I was living with.

Matt Feret (00:43:14):

Did you ever feel like running away?

Charlotte Bayala (00:43:16):

Oh, all the time. There are so many times where I'm like, "What if I just left?"

Charlotte Bayala (00:43:24):

It's weird because there's a lot of things with caregiving that they're unsaid because people are like, "I can't say this. People will judge me." And that's one of the things. I don't know a person who's found themselves deep into caregiving, overwhelmed, just feeling like crap and not thinking, even if it's for a split second, "If I could just go. If I could just go." And sometimes it's not, if I could just run away for forever, it's, "I just want to run away for like 10 minutes." So yeah. I think if anyone has been a caregiver for a long time and says that they've never felt that way, they're full of crap. There's just no way. It is so difficult. And I have it relatively easy.

Charlotte Bayala (00:44:21):

I'm not changing diapers. I'm not bathing. I'm not moving a person so they don't have bed stores. There's so many people that are in that part of caregiving. I've had it in terms of caregiving, relatively easy, comparing to other people. But I've even had moments where I'm like, "Crap, this is too much." Because there are times where you're like, "Life before was so much better," even if it wasn't. It's always better, even though when you were in it, you're probably like, "This sucks." But when you're looking back, you're like, "It was so much better than. If only I could just be that person again." And I think it's normal. When I was a parent, there were times where my daughter maybe was having a temper tantrum in the middle of a mall. And I was like, "If only I could run away right now. I just want to snap my fingers." So definitely-

Matt Feret (00:45:20):

If I just leave the stroller here in middle of the sears, would someone take care of them?

Charlotte Bayala (00:45:29):

Exactly. Caregiving for me, I can see a lot of parallels between caregiving and parenting. But the thing is when you're a caregiver, you don't have the support that a parent normally has. And when I was a young parent, I had tons of young parents going through the same thing I was going through and willing to talk about it. When you're a parent, there's so much doubt. There's so much worry of judgment. There's so much you don't know. And there's so much a need to try to act like you do know how to do what you're doing, but you really don't. Caregiving is the same. But the thing is, they're not seen. There's no visual. You don't have a baby, you don't have a stroller. You don't have this other kid. And I think that's what's hard.

Charlotte Bayala (00:46:25):

And so when you feel those things like, "I wish I could just run away. I'm angry. This is my life right now. This isn't what I wanted it to be." Those are harder. You hide them more. And when you hide things or you keep them to yourself, they have more power. Those feelings and thoughts have more power than just letting them out and telling them to someone.

Matt Feret (00:46:47):

So you've talked a lot about acknowledging all of that, advocating for yourself and really focusing in on your self-care. And again, you've come from, and this is where I'm finally going to get to it, which is, you had, I'll just call it a natural advantage of being a yoga instructor. And then also sounds like you did a lot of meditation practice and breath control practice even before this happened. So not everybody has that. Talk to me about how to use that? Why should people listening or watching turn to yoga, meditation, breath control to help with that self-care and help with that advocacy and that confidence and to help with those feelings of sadness, anger, joy, and that roller coaster you talked about?

Charlotte Bayala (00:47:35):

Yeah. I think yoga, meditation and breath work, the things that are all common with all three of those is that, first of all, gives your body an opportunity to understand that it can just let go. There are things that happen inside your body, just mechanically and physically that when you start to breathe deeply, and when you start to do things that you're just focused on your breath, it flips your nervous system into this place where it doesn't feel like it has to continually look out for ways to escape. And so when you do that, you automatically start to feel better. And so maybe yoga, meditation, breathing, for someone who doesn't do that, I would say, be okay with something being different and trying something new. I've met so many people who are like, "Yoga's not for me. Meditation's not for me. I breathe. I don't know why I have to learn how to breathe."

Charlotte Bayala (00:48:47):

I have put people through just a five minute breathing exercise, and who have never breathed before other than normal breathing. Have never done yoga, have never meditated, just normal people who are caregivers. And when they finished, it always surprises me. It's like what keeps me going, is the look on their face when I bring them back out of it. And they're like, "I thought you said five minutes. That felt like a half hour. I felt like I just had a nap." It's just so awesome to see how, if someone can learn just how to breathe, how much better they feel. And the problem with caregiving is, we don't feel well. And maybe we didn't feel well before we were a caregiver either. I don't know. Some people could have had stressful, hectic lives before they became a caregiver.

Charlotte Bayala (00:49:48):

And so for me, breathing especially is free. It's free. It's under your control at all times. So for me, if I can teach someone how to breathe, I can teach them how to find joy in small moments throughout their day. So to try breathing would be the first step I would say, because that's fairly simple. You don't need a lot of instruction to learn how to just do deep breathing.

Matt Feret (00:50:19):

How I learn how to do that? You don't need to take me through it right now, but how do I learn how to do that? Is that a book? Is that a course? Is that a YouTube video?

Charlotte Bayala (00:50:28):

I have an audio file. Actually, I have a three minute breathing exercise on my Instagram page. It doesn't take much. But you can't just be like, "All right, I breathe. My belly went out and it came back in. I'm all good." Right? There is a process. So if you could find someone or you can find something that you can listen to, that would help. But the whole problem with all this is, I could tell you that yoga helps you relax. It helps you connect with your body. It dials you in with how you're feeling. Meditation helps you not only relax and dial in with how you're feeling, but it can teach you how to begin to respond to life instead of react.

Charlotte Bayala (00:51:17):

Meditation creates resilience. So if you're someone who, let's say you go to a doctor's appointment with your person that you care for and they give you bad news. If you're a person that automatically you're stressed, you're overwhelmed, you're flustered. You can't even figure out how to get back home. If you were to begin to meditate on a regular basis, the next time that would happen, you would be a little bit more resilient. You would still get upset. You would still get stressed out, but you wouldn't be so flustered and you'd be able to get back home. And the more you meditate, the better able you are to see what's happening in your life. But allow yourself to take a step back and say, "All right, this is what we're going to do." Instead of breaking down and falling apart, whenever anything is thrown at you.

Charlotte Bayala (00:52:14):

So I can tell you, all of these things will make your life so much better. It doesn't create happiness per se, but it allows you to have those windows of opportunity to find happiness, because you're more aware of yourself and your life. It helps you not be your emotions. So you come to this place where you don't say, "I am sad. I am anxious. I am stressed." You start to move into, "I feel sad. I feel anxious. I feel stressed." And when you can separate yourself from your emotions, you're better able to live your life outside of them. Because if you were to wake up in the morning and say, "I am so stressed out," you would spend the rest of your day stressed out. But if you can come to a place where you wake up and you're like, "Well, this is going to be a difficult day. I might feel stressed, but let's see what happens."

Charlotte Bayala (00:53:12):

That's a big change. So I can tell you, you can do all that. Just yoga, just meditation, just breathing. The problem is that you have to want it. I can't help someone whose like, "I don't need to breathe. Breathing isn't anything. I'm already doing it. All right. Well, maybe we could do a breathing exercise and we can try it out. And if yes, then I'm sure they will see." But you have to want to know. You have to want better. You have to want more in life than what you have. And you have to be able to put in the work. Caregiving is work. Taking care of yourself is work. And someone can say, "I'm too tired to do anything." And my response to that is, "Life is hard. We get what we put into it. I want to help you figure out how to make it easy for you to figure out these things," because people don't have to be meditators. That's fine.

Charlotte Bayala (00:54:22):

Some people can't sit down for five minutes with themselves in quiet. It's too much. It's too noisy in your head. I completely understand that. My husband is not a meditator, as much as I try. He is not. We will not be going on any yoga retreats together.

Charlotte Bayala (00:54:42):

But when life gets really hard, I do know that he knows how to breathe now. I've seen him do it. He won't announce it. I know he does it. I know my daughter does it. They'll roll their eyes when I tell them, but I've seen them secretly breathing through things when things get hard. And so I know that it's possible for anyone to learn how to do these things, but you have to be able to say, "I'm ready for a change. I want to try something different." Or like me. "I want to go back to doing something that I used to do that I remember really felt well, felt good for me to do. I just need to try to find my way back to it." And sometimes all that is, is someone to keep you accountable, someone to help you learn how to do it. For me, I did have that advantage.

Charlotte Bayala (00:55:42):

I knew how to do it. And here's how hard caregiving is. I knew how to do it. And I stopped doing it exactly when I needed it. So I get that it's difficult to do these things for yourself. That's my whole purpose is to let people know, let caregivers know you're not alone, because loneliness is a big factor of caregiving. And this is not it. Don't be resigned to, this is the way my life's going to be for forever. It can get better. You just have to want it. And you just have to be willing to learn and to put a little work into it.

Matt Feret (00:56:20):

How long does it take? I heard pick one. So you can't do all three, and they can't do two, and don't want. Pick one and go with it.

Charlotte Bayala (00:56:29):

Don't do all three. Yeah. Don't ever do all three. For me, I start someone with one thing and you do that one thing until it becomes the thing that you always do. So much is thrown at us. You see lists online, "Here are things caregivers should do to take care of themselves. You should meditate. Do yoga. Journal, do breath work, connect with people, make sure to make yourself a priority." But then it's like, "Well, how the hell do I do any of that?" For me? The most important thing for any caregiver to do is to find that one thing. And that one thing might not be breathing. It might not ever be meditation. It might not be yoga. But if it means that you take 10 minutes in the afternoon and you just sit with a cup of coffee or tea, no computers, no phones, nothing on, no one talking to you, just you and that cup of coffee.

Charlotte Bayala (00:57:26):

Sometimes for me, that's meditation. Just being fully present, not gulping it down. Feeling the cup, looking at the cup, looking at the steam, actually tasting it. Just a moment for your body to say, "We're okay. In this present moment, I am okay. I am safe. I'm just going to enjoy this cup of coffee." That, every day. That's a container. That's like time for yourself. If you can do just that one thing for yourself and try to make it consistent, you'll start to realize that those moments are things that you look for during the day. And that is self care. It doesn't have to be massages and expensive things.

Charlotte Bayala (00:58:15):

Self care is taking time for yourself every day where you can just be. Be with yourself, not taking care of anyone, not doing anything with... Not listening as little out outside input from your world as possible. So you could just focus on one thing, because I can tell you, if you focus on that cup of coffee, your breath is not fast. It's not shallow. It's going to be a lot calmer and it's just happening on its own.

Matt Feret (00:58:47):

Where do I start if I want this? And I don't know which one to start with. Or I've done yoga and I don't really like it or I'm not sure. But I've tried one of those meditation apps that celebrities push, and I turned it off after a couple times. Where do I start? Yeah. How do I get going?

Charlotte Bayala (00:59:07):

I would say if you're starting on your own, think back to something that you used to enjoy doing before you were a caregiver, everyone has a thing. Maybe you like to play video games or maybe you like to color or draw. Maybe you like to make jewelry or you were someone who used to tinker around in the garage with tools and wood. Find that thing that you used to enjoy doing. You might have to go back to childhood, right? I don't know. If you gave up all of the fun things you used to do when you got married or became an adult, go as far back as you need to and find that thing that you used to enjoy doing and start doing that again. You need to find a way to remove yourself from what you're hyper focused on.

Charlotte Bayala (00:59:58):

Caregiving is all encompassing. It will just control everything that you do. All you need is to remove yourself from that. So whatever you can do to do that is what you need. It does not have to be the standard thing from a list that you keep seeing. There's no secret happiness factor in journaling if you don't like to write. It's not going to happen. So either find something that you enjoy doing, find your way back to that. Or if you need to be held accountable, if you need someone to be like that backup like, "No, that was wrong." You need to do that for yourself. I can't believe they were complaining that you just wanted to sit down and drink a cup of coffee. If you need that, then you need to find that person.

Matt Feret (01:00:49):

How do you find that group? I know they're everywhere. You've got Facebook groups, they're local, hyper, local, very broad. There are associations. I said in the beginning of the show, this is, I don't know, endemic pandemic. I know those words get tossed around a lot, but this is real. These are like tens of millions of people in caregiving pieces. And there doesn't seem to be one national association of caregivers that has all the answers for everybody. It's unpaid work. People sacrifice careers, they sacrifice travel. What have you found in your 10 years of being a caregiver to be the most helpful?

Charlotte Bayala (01:01:29):

Yeah. I think that finding any way to be in community with people who are going through the same thing with the energy that you need in your life. So there are some groups out in the world that you can easily connect to that might not be completely positive. Maybe that's what you need. Maybe you need a place where you can complain about everything. You just need to just complain and you want to hear complainers. That's not hard to find. It's also not hard to find groups that are positive. You have a problem or you have something that you want to just say, and people are there to say, "You know what? I hear you, I get it. Here's what's worked for me in the past." So there's online groups. There's tons of Facebook groups.

Charlotte Bayala (01:02:28):

So I would say try out different groups, different opportunities. There's a lot of different local groups that do things. I know here in Minneapolis, we have a group that specifically focuses on male caregivers. And they have virtual get togethers, but then they get together in person. There are different places, organizations, and nonprofits that are hyper local and work with caregivers. And then there are just some bigger things. Some of the cancer organizations have an offshoot caregiver, subset where they'll have resources. So they do groups within that are moderated. It's the, how is it moderated and what is the focus?

Charlotte Bayala (01:03:24):

And you have to be okay with a group not being okay. I would say if you're in a group and at any point you don't feel good about yourself for some reason, or you feel like you can't share the way you'd like to, then find a different group. And I think it's like that if you think about therapy, which I suggest all caregivers do for themselves. Sometimes a therapist just isn't a good fit, and that's not a personal thing. It's just a thing. And you just move on to the next one.

Matt Feret (01:03:52):

Have you found more value in online national Association's Facebook groups in terms of your journey, or have you found more value to the local in-person thing? Or is it a combo?

Charlotte Bayala (01:04:05):

Yeah. Well, the thing is when I first became a caregiver, Facebook groups weren't a thing. I feel so old, but-

Matt Feret (01:04:13):

You're making me feel old.

Charlotte Bayala (01:04:18):

Facebook existed, so I'm not that old. But Facebook groups were not a thing. And there weren't a lot of local groups. So when I, so-called, grew up as a caregiver, it was me trying to figure it out for myself. And the frustrating thing is never have I been with my husband in a medical center that has addressed or reached out in a caregiver capacity. And so for me, I really haven't been in any of those groups or visited until maybe in the past three years.

Matt Feret (01:04:56):

Well, wait a minute, hold on. Rewind that. So I think you just said, you've been going to hospitals and doctor's appointments for 10 plus years.

Charlotte Bayala (01:05:04):

No one has asked me how caregiving has been. Nobody has offered caregiver resources or a caregiver kind of, "Hey, this is what your life is going to be like." And we've been in big famous medical centers. It hasn't been like local in the middle of nowhere. These are cancer centers that we've been in that have not reached out in any way that has to do with caregiving. In fact, sometimes doctors will not even say, "Hey, how are you doing? How are you doing?" I get that. An oncologist, their focus is my husband's cancer. But I think there's something to be said with just checking in, because caregivers really feel unseen. We're invisible. And so that starts, I know it started for me the first time I walked into a doctor's office with my husband when it came to talking about his cancer, because there was never a check-in. And really, there has never been a check-in and we've had some really good doctors, but they are not addressing the caregiver issue.

Charlotte Bayala (01:06:22):

And so if you see that doctors aren't addressing you, sometimes there have been doctors that have looked at my involvement as a hindrance when I'm like, "Dude, I'm the one who's keeping him alive all the days of the year, except for the one hour that we're here twice a year." Caregivers are partners. They should be partners in the care of the person when it comes to the team that that person has. Caregivers actually should have their own team to tell you the truth. But until we become important enough for it to be considered, it's going to be that way. So seeing that, feeling like my caregiving was not important in the eyes of the people taking care of my husband, growing up as a caregiver in those early years, not really having a connection with other caregivers because those groups didn't really exist, is why when I finally got to a place where I thought, well, how can I change that? That's where the podcast came from and everything after that.

Charlotte Bayala (01:07:35):

It was solely so that other caregivers could know, "Look, you are not alone. You feel alone. Caregiving is lonely because of these things, but you are not alone. And the things that you're thinking, saying in your head, and doing, are not just you. You are not wrong. You should not feel guilty for feeling these things. And I want to tell you this because no one told me and I had to figure it out for myself." So it's basically, I want people to be like, "All right, here's what I had to go through. Here's how I had to learn all these things. Let's jump forward." Closer to you just being, "You know what? I'm good. I can think these things and I'm all right. I don't have to be overwhelmed with worry because I know how to breathe." Those things that I had to learn on my own so that they don't have to take all the time that I did, stumbling through trying to figure it out.

Matt Feret (01:08:33):

Talk about your podcast, talk about that. When did you decide to start it? What's the reception been like? Not just the podcast, but the people and the audience and all that, because that's such an awesome thing that you're doing specifically for caregivers and what a wealth of knowledge and experience you can bring.

Charlotte Bayala (01:08:52):

So I originally in late 2018 thought, I'm just going to do these little short videos, just talking to the camera and putting it up on Facebook, just so that people can see. And just like a quick 30 seconds that they're not alone. And I had a whole list of things that I was going to talk about. And then I talked to someone and they said, "That sounds like a podcast," because short form video wasn't a thing back then. So I was ahead of my time. And so I went the podcast route and I'm happy that I did because I could say more. I wasn't constrained by the attention span of someone watching a video.

Charlotte Bayala (01:09:40):

And in the beginning, it was great because I started it February before everything shut down. And so that is the one thing that stayed consistent through that whole entire time was, I have to do another podcast. Like, "Oh no, it's Tuesday. My podcast needs to be done by Thursday." It was always something that I had to be accountable for. And I don't know, it was weird because I don't know why, because it's not like anyone would be like, "Well, I'm dinging you because you didn't post a podcast this week." So it was like this internal thing, and it was really just the drive to create something that someone could listen to that I wanted to hear, that I needed to hear when I first became a caregiver, that I needed to hear three years after becoming a caregiver. I just wanted to let other caregivers know, these are the things that we all feel and we all think about, and we all are scared of, and it's fine.

Charlotte Bayala (01:10:49):

And I'm going to say them, even though the fear of judgment is real for all of us, but I'm just going to be real and I'm going to be vulnerable and slightly uncomfortable just telling the world these things. And hopefully someone will listen and hopefully it'll help. Especially in the beginning, I've had people reach out and just say, "I just became a caregiver. My friend told me to listen to your podcast. I decided to listen to it when I took a walk today and I couldn't finish my walk because I had to stop and cry so many times. I just turned around and went back home because you were me. You were saying the things that I was going through." And so it's that. That's why the podcast exists.

Charlotte Bayala (01:11:39):

And also so that I can help people in small bits and pieces see that there's more, and in giving them that knowledge from the things that I'm best at. Yoga and meditation, I've been teaching that for over a decade. Those are skills that I shouldn't be keeping to myself. I should just be giving them to people so that they can try it for themselves. They know that it exists. So many people if I met and they're like, "I didn't know about this stuff until I heard it from you."

Charlotte Bayala (01:12:15):

So I think a lot of times we feel the things we know aren't important. Everybody knows them. But I think if every caregiver went out and just posted on whatever social media they're on, "I'm a caregiver." First of all, "I'm a caregiver." Some people in your life might even know that. And this is what I'm struggling with this week. Just being able to just do that, it feels so much better than just trying to keep it to yourself. So the podcast was the first thing. The caregiver coaching came after that. And then there's some other new things that are happening next month that I'm excited about. So it's just me finding different ways to connect in however that person needs to be connected with. Not everybody likes to listen. Some people need to read. Some people need to have that connection with the person. So just being available in ways that I can do things best to help people find their way, because caregiving it's not valued. So if you're doing something that's not valued, you have to work harder to make it important in your life.

Matt Feret (01:13:34):

Charlotte, thank you so much for the time today and all of the wisdom and insight that you shared. Look, we could talk for another hour and a half. I know we could because there were topics I didn't get to. So maybe we'll do this again in a while. What questions did I not ask that I should have?

Charlotte Bayala (01:13:53):

No, I think you asked the important things. Basically, just know that if you're a caregiver, you are important. People need to be there to help you ask for the help that you need, create your own team even if you have to piece it together yourself. And you need to make yourself a priority because if you don't, then you won't be available to care give as long as you'd like to, for the person that you love, and just spend time with them, enjoy them. Yeah.

Matt Feret (01:14:27):

Charlotte, how do people find you on the internet?

Charlotte Bayala (01:14:30):

They can go to loveyourcaregivinglife.com. And it's the same Instagram, Facebook, TikTok. It's Love Your Caregiving Life. That is the best way to find me.

Matt Feret (01:14:42):

Thank you so much.

Charlotte Bayala (01:14:43):

Thank you, Matt. I appreciate it.

Matt Feret (01:14:46):

Be sure to connect with charlotte at Charlottebayala.com and make sure to check out her podcast, Love Your Caregiving Life. You can find links to those as well as show notes and websites discussed during the show at TheMattFeretShow.com. And of course, please subscribe to the podcast on your podcast platform of choice. I'd also really appreciate it if you'd subscribe to The Matt Feret Show YouTube channel, which you can get to through TheMattFeretShow.com or just by searching for it on YouTube. Until next time, to your wealth, wisdom and wellness, I'm Matt Feret, and thanks for tuning in.

Matt Feret (01:15:26):

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Matt Feret (01:16:25):

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